Two national surveys, released last week by the American Chronic Pain Association, showed significant differences between public perceptions of fibromyalgia and the realities of living with the condition.

The ACPA partnered with Forest Laboratories Inc. to try to compare the attitudes of people living with fibromyalgia with those of the general public.  The results showed that fibromyalgia patients inaccurately believe the outside world views them negatively. Of the people surveyed, 41 percent said they think people with fibromyalgia are courageous. Only 17 percent of the fibromyalgia patients believed society views them in such a way.

“Imagine, for some people living with fibromyalgia, having to deal with a persistent pain condition while feeling isolated from society,” said the founder and executive director of ACPA, Penney Cowan who lives fibromyalgia herself. “These survey results show that some people with fibromyalgia have misperceptions about how society views them, and our hope is that they learn about these findings and feel empowered to speak openly about their experiences with this condition.”

Fibromyalgia is a common musculoskeletal disorder in which people experience long-term, widespread pain throughout the body. The condition is also linked to fatigue; sleep disturbances, headaches, depression, and anxiety. The American College of Rheumatology estimates that 3 to 6 million Americans have fibromyalgia and it’s the second most common musculoskeletal disorder. The exact cause of the condition is still unknown, but some researchers believe it might be caused by a miscommunication between the brain and the nerves. For some reason the brain overreacts to normal stimuli and perceives things that most people wouldn’t even notice as pain. MRI’s have shown that the areas in the brain that are responsible for pain react differently in fibromyalgia patients.

The lack of conclusive information about fibromyalgia within the medical community makes it difficult for the general population to understand the condition. The surveys, known as “Two Takes on Fibro: Public Perceptions and Private Realities,” also showed that while 92 percent of people of have heard of fibromyalgia, most do not understand the everyday challenges the condition poses. Many people did not know that simple tasks such as driving, doing chores, and getting dressed for the day are extremely painful for fibro patients.  So, while the general population viewed those living with fibromyalgia positively, they did not understand how difficult life could be with the illness.

Overall, the studies reinforced what many with fibromyalgia already knew, people are sympathetic, but there is still a lot more to learn. Cowen said the lack of understanding from the general public could keep people dealing with symptoms from seeking treatment. Also the lack of knowledge about fibromyalgia may contribute to why patients feel they are seen negatively. Those who struggle with fibromyalgia sometimes assume that ignorance means people are looking at them negatively.

Researchers questioned 1,215 men and women diagnosed with fibromyalgia and 1,022 adults from the general population for the surveys. The survey of people with fibromyalgia consisted of 58 questions and the general population survey included 37 questions.

Some experts in the field say assumptions and perception should be the big take away from the surveys. Writer, speaker, and fibromyalgia patient, Sue Ingebretson, said negative assumptions and feelings run rampant within the fibromyalgia community. Her book, FibroWHYalgia discusses her struggles with fibro and how she was able to go from being completely disabled to having almost no symptoms. Since her journey, Ingebretson has dedicated her life to counseling others who deal with chronic pain and helping them manage their symptoms.

She says most people with fibro engage in negative self-talk and because they look at themselves negatively, they assume others do as well.  Negative perceptions about oneself can often make the condition worse. People with low self-esteem often do not bother exercising, changing their diets, or seeking counseling, all of which are known to reduce fibro symptoms.

“I wouldn’t be here without having to crawl through the chaos, that I really had created,” Ingebretson said. “I love talking about that because it’s not about blame and people who are really sick have a hard time seeing the difference. They think that going over your life and making changes is about pointing out blame or looking at failure. You can’t change anyone, you can only change yourself and you can only change yourself by looking at what you’ve done and is it working? Or do you need to do something else?”

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Living With Pain: Brianne Levine’s story

It was Mother’s Day and Brianne Levine could not manage to get out of bed. She was achy all over, had sharp, burning pain in her joints, and it hurt when people would grab her arm or bump into her. Things were just harder to do.

Levine struggles with normal activities on a regular basis and this Mother’s Day was especially difficult because she had been on her feet for long hours the day before. The pain she experiences might be normal for a grandmother or a cancer patient, but Levine is a master’s student at Cal State Fullerton and she does not have any terminal or infectious diseases. She has voluminous curly brown hair, a big smile, and she just barely turned 30.  She also has fibromyalgia.

“Sunday I could barely get out of bed and luckily my mom didn’t feel like doing anything for mother’s day because she’s disabled too so she was perfectly happy to have a lazy day and we all just stayed in our pajamas,” Levine said.

Fibromyalgia is a common musculoskeletal disorder in which people experience long-term, widespread pain throughout the body. The condition is also linked to fatigue, sleep disturbances, headaches, depression, and anxiety. The American College of Rheumatology estimates that 3 to 6 million Americans have fibromyalgia and it’s the second most common musculoskeletal disorder. The exact cause of the condition is still unknown, but some researchers believe it might be caused by a miscommunication between the brain and the nerves. For some reason the brain overreacts to normal stimuli and perceives things that most people wouldn’t even notice as pain. MRI’s have shown that the areas in the brain that are responsible for pain react differently in fibromyalgia patients.

Fibromyalgia usually occurs in women between 20-50 years old. The majority of patients are diagnosed in their mid-thirties or early forties.  Levine’s symptoms began when she was only 19-years-old. She says she had a headache that lasted for a year.

“I finally went to the doctor and after all the testing; CAT scans, MRIs, blood tests, etc, my doctor told me that I was a ‘control freak’ and that I ‘needed to relax,’” Levine said.  “He then gave me a prescription for Valium. He said nothing about physical therapy, or yoga, or psychotherapy, or acupuncture, or meditation.  No other answers other than addictive downers.”

Levine’s doctor did not think she had fibromyalgia because up until a couple of years ago many doctors did not believe children or young adults could get fibromyalgia. In fact, many doctors did not believe the condition was a real pain disorder. They believed it was a mood disorder or some other type of psychological problem. Many young people have to deal with physicians who think they are faking their symptoms or are just stressed out.  Research has shown that it can take up to four years before a child or young adult gets a proper diagnosis.

Dr. Lonnie Zeltzer understands Levine’s struggle to get a proper diagnosis.  She is the director of the pediatric pain program at the Mattel Children’s Hospital at UCLA and she has done extensive research on juvenile pain.

“Usually kids who come see me have seen other physicians and have been through many procedures. For example, teens with fibromyalgia may have already been to rheumatologists–usually more than one–may have been to orthopedists, and a primary physician. So it’s sort of a bottom of the funnel in terms of pain problems,” Zeltzer said.

Luckily, Levine only had to wait two years to get her diagnosis. But identifying the problem is only the beginning of a long journey for most patients. Elizabeth Blache, 21, a friend of Levine’s, also has fibromyalgia. She says the lack of understanding was difficult to deal with.

“I was diagnosed when I was 12 so it’s kind of been a rollercoaster. People just thought I was lazy or unmotivated, or didn’t care, or that I was just making it up,” Blache said. “I was almost kind of embarrassed and didn’t want to tell anyone that I had it. Because in my experience people that I did tell, even like my friends and their parents, would be like ‘what is that I’ve never heard of that’ then they’d look it up and it would say oh it’s a psychological disorder.”

Even after she was diagnosed, Blache’s doctors did not believe her pain was real. She said she was put on three different antidepressants because doctors thought she was making it up.  At one point, she was hallucinating because of all the medication she was on.  After her experience, Blache decided to give up on medications altogether.

For Levine, the hardest part has been altering her life because of her condition. She got her bachelor’s degree in theater. Before her diagnosis she was planning on becoming a stage manager and working with theater sets, but the fibromyalgia would not allow her to stay in such a physical atmosphere.  Levine eventually made the decision to get her master’s in psychology and work on fibromyalgia research.

“It really affects everything I do everyday. It affects every decision. I think it affects me more now than it did at first because now I understand it better,” Levine said. “At first you don’t know what can affect you and what can’t. Then there’s a point where you realize that everything affects you and that every decision you make will have consequences.”

Levine said the cognitive disturbances are also very difficult.

“If I could just have a little more energy and a little less cognitive fogginess, I think that would make life a little easier. Because pain, I can deal with pain. Pain is pain,” Levine said. “The pain doesn’t bother me as much as the fatigue. With the energy you can overcome the pain, you can still live your life. But without that energy to do it and to say no to the pain, that part’s hard.”

If there had been more information available to Levine and Blache when they were diagnosed their experiences might have been different. Zeltzer says her research has shown a bit of a bright side to experiencing pain at a young age.

“In the brains of children, adolescents, and young adults, there’s still a lot of plasticity. There’s a lot of room for alteration and change, so in that sense with good therapy a lot of pain is much easier to treat in children and adolescents than in adults,” Zeltzer said.

The earlier people are given the coping mechanisms to deal with pain, the easier it is for them to overcome it. According to Zeltzer a big part of pain relief is retraining the brain to perceive pain differently and that is much easier to do at a young age. Zeltzer also said people should never assume that people with fibromyalgia are lazy or unmotivated.

“It’s interesting that a lot of people with chronic pain are really smart, creative, talented individuals and we think there’s something about the neural biology of a really smart, observant, creative brain that makes neural connections quickly,” Zeltzer said. “They sort of create pain or learn pain because the brain learns quickly. So what happens in smart people, their pain systems get turned on and it can become a widespread pain problem.”